Save Sight Institute connects, informs vision impaired

The Sydney Eye Hospital-based Save Sight Institute (SSI) held its information day on 27 August at St Andrew’s Cathedral School in the heart of the Sydney CBD. The day was made possible by a special and generous grant from the QBE Foundation.TRANSITIONING FROM CHILDHOOD TO ADULTHOODFirst on the program was Mr Harrison Kirkwood, a youth ambassador for the SSI. Mr Kirkwood was born with Peters Anomaly, which involves corneal opacification and anterior chamber cleavage due to the dysgenesis of the eye’s anterior segment during development. He lost most of his vision as a teenager, and his presentation described his transition to adulthood after being diagnosed with a vision probl when only a few months old.{{quote-A:R-W:450-I:2-Q: Have a goal that is part of you but not a definition of you -WHO:Mr Harrison Kirkwood, a youth ambassador for the SSI}}Mr Kirkwood had his first corneal graft before his 17th birthday and, while successful surgically, his vision probl was not solved. As a school student, visually intensive courses such as geometry and algebra proved particularly challenging, making a combination of Braille and technology necessary. He quickly learned to ‘pick his battles’, develop a broad independence, and accept help as required.For him, 2016 has been a year of acceptance, evolution and growth of his personality, and a time to plan his future. His key messages were: have a goal that is part of you but not a definition of you; believe in yourself and adapt accordingly; seeing, hearing, and walking are not entirely in your control; live in your mind and although it can be either a friend or an eny, you have to make it your friend.His parting comment was quite profound: “When motivation is needed, rber that you don’t become a true sailor on a smooth sea.”OVERCOMING VISUAL IMPAIRMENT TO PURSUE MUSICMs Rachael Leahcar is a well-known singer/songwriter from a musical family whose first successful appearance was on the television series The Voice; she managed to make third place at only 12 years of age.Her life started small, abnormally so at 1.6 kg, but hidden inside was a big challenge – retinitis pigmentosa (RP). An MRI at six months of age revealed RP, which has left her with <10% vision.Her musical career started at seven years of age and she self-published her first album at 14. Practical probls were apparent by high school when she could no longer hide the fact that she tripped over school bags and up stairs, and by Year 10 she was a cane user.To cope, Ms Leahcar developed a sense of humour, which was clearly evident during her delivery. Even her palindromic stage name was chosen to increase her confidence.Along the way, Ms Leahcar became the Royal Society for the Blind’s Adelaide ambassador. Acadically, she was no slouch and completed some Year 12 subjects in Year 11. Her ambition was to be a speech pathologist, and after completing Year 12, she was offered a position in a university speech pathology course.Still motivated by a music career, she deferred for the two-year maximum period permitted. Her third placing on The Voice resulted in an alignment with Ms Delta Goodr as voice coach and eventually, a contract with Universal Music.Her Universal albums were released in 2013 and 2014. When she was no longer able to defer her university studies, she entered the speech pathology course and acquired a guide dog to aid her mobility and independence after further deterioration in her vision. She gave up her speech pathology ambitions after just six months and returned to her first love, music.Currently, she in working on her next album and a tour is scheduled for late 2016. She characterised herself as being a singer that happens to be blind rather than being a blind singer.BRACING ADVOCACY FROM A YOUNG AGEAlthough only 16 years old, Mr Connor McLeod, who has been blind since birth, is already experiencing success as an advocate for the blind and vision impaired (VI).Earlier this year, it was announced that the new Australian $5 banknote would incorporate a tactile feature to allow the VI to identify it, and the upgraded banknotes entered circulation on 1 Septber. The inclusion of the tactile feature was the eventual outcome of a Change.org campaign started by Mr McLeod and his mother, Ms Ally Lancaster, some three years ago.{{quote-A:L-W:450-I:4-Q: A lack of sight is not synonymous with a lack of vision. -WHO:Mr Connor McLeod, advocate for the blind and vision impaired (VI)}}Vision Australia and Google joined the campaign, which gained bipartisan political support in parliament. While the petition carried 57,000 signatures, 360,000 of Australia’s VI people stand to benefit.While the Reserve Bank of Australia (RBA) resisted initially, the new note will be rolled out progressively and other denominations are expected to follow over the next few years. The acceptance of Mr McLeod’s request was announced originally in February 2015.The irony is that the RBA’s company, Note Printing Australia, has been printing ‘plastic’ notes with tactile features for other countries for some time. Mr McLeod noted that 25 countries now have tactile currency, although not all are customers of Australia’s note printing business.Mr McLeod is Australia’s first ever recipient of the international National Braille Press’ Hands On! Award for his tactile banknotes and endeavours within the NSW Department of Education to initiate changes in the way VI students are catered for in schools. His parting comment was, “A lack of sight is not synonymous with a lack of vision.”Careful observation under the lectern he stood at revealed his skilful use of several pages of Braille notes held out of sight. For him, it was easy to engage the audience ‘visually’ while at the same time ‘reading’ his prompts to himself – something those with normal vision cannot do without being very obvious.A LETTER TO HER EIGHT-YEAR-OLD SELFMs Sacha Thomas, a 16-year-old SSI youth ambassador, was born with ocular subcutaneous albinism and the VI that the condition usually causes. She used a letter to her younger self as the vehicle for a heartfelt advice session.Ms Thomas opened with the assertion that experience will shape her into a wonderful 15-year-old (her age when the letter was penned originally), with many friends and family to assist. Despite her initial fears, her transition from a small primary school to a large high school was nothing to worry about and resulted in her being surrounded by incredible people.Eye operations in 2012 and 2014 also proved that her misgivings were baseless. She gained physical independence, took over advocacy for self, and became comfortable with asking for help. She also got involved with headspace, a national youth mental health foundation.Noting that self-acceptance of her VI was required and that it was better to brace her condition even though it “sucked”, Ms Thomas’ advice to herself was to “see past it”. She acknowledged that her parents’ uniform treatment of all their children was a blessing and importantly, they never got in her way when she was trying whatever she thought she could manage.

PRESENTERS
Harrison Kirkwood	Rachael Leahcar	Connor McLeod

 SEIZING OPPORTUNITYReturning speaker, paratriathlete, and SSI ambassador Mr Jonathan Goerlach regaled the audience with some of his more recent ups and downs. Mr Goerlach suffers from Usher Syndrome, a relatively rare and unfortunate combination of hearing loss (often discovered first) and vision loss caused by RP or an RP-like ocular condition.Normally, the syndrome is classified as Usher 1 to Usher 3 depending on hearing, balance, and progression issues. Type 1, which has five different subtypes, has deafness and balance (abnormal vestibular syst) difficulties. Type 2, which has three different subtypes, has hearing difficulties that are usually not progressive with a normal vestibular syst. Type 3, which is very rare, has a progressive loss of hearing and only about half of cases have vestibular syst probls.Together types 1 and 2 account for 90–95% of all cases but there is an elent of ethnicity in the genetic mix as well, so country of origin has a bearing on prevalence figures. The RP-induced vision loss also varies by type: type 1 usually exhibits vision loss before 10 years of age, vision loss in type 2 cases usually waits until late adolescence to become apparent, while vision in type 3 starts deteriorating in the teenage years.{{quote-A:R-W:450-I:6-Q: Not everything being within one’s control -WHO:Mr Jonathan Goerlach, SSI ambassador}}At age 15 when he was diagnosed, Mr Goerlach found little support for his condition, which resulted in tunnel vision, night blindness (nyctalopia), and hearing impairment. He gave up his sporting passion at 18 but rekindled his interest at 28 when he realised that he could still compete – against similarly impaired sportsmen. Enter the triathlon, a 750 m swim, a 20 km bike ride, and a 5 km run. He expressed some frustration with the Rio paralympics excluding VI athletes from his sport.Mr Goerlach stated that each person was different in how they met the challenges of VI and they could either struggle or seize the opportunity. He admitted to taking six or seven years to deal with going blind and he listed navigating, finding its in supermarkets, and locating and using bus and train stops as some of challenges he faced.Another difficulty he confronted was when and if he should accept a guide dog. The questions he asked himself included “Where will I end up?” and “What’s the worst-case scenario if I take a particular direction?”He went on to describe the probls he faced after deciding to relocate to Melbourne from the familiar environment of Canberra and its Australian Institute of Sport. Other probls were more a case of bad luck than anything else, including a cut to his Achilles tendon six weeks before a world championship, two ear infections and a cold, a missed flight out of Australia, and mechanical probls with his bike. He dismissed these probls as cases of “not everything being within one’s control”.ASSERTING INDEPENDENCr Grae Innes AM, one-time Australian Disability Discrimination Commissioner (for more than 13 years), company director and lawyer, has been blind since the age of 12. He found himself confronting the perennial question: “What job can I do?”Fortunately, Mr Innes’ parents treated him like an integral part of the family and always found a role for him to play that was suited to his abilities. He paraphrased his life in the title of his latest book, Finding a Way, which covers his 60 years of achievent, much of it related to advocacy, especially for change. Unsurprisingly, the book was released in printed and Braille form simultaneously, the former also having Braille bossed on its cover.Despite the advances made by those with a disability in overcoming prejudice, preconceived notions, etc., Mr Innes raised a description of a residual probl – namely, the soft bigotry of low expectations. His advice was for the VI to lift their game and not rely on others. He also suggested that one sure way to reduce reliance on others was to carry a Braille note taker so that a sighted person would not have to be relied upon when useful information was being conveyed.Other advice included, play the hand you are dealt and accept support from peers because they “get it”. Currently, Mr Innes is the president of Blind Citizens NSW.His final comment was, “Finding a way is what I do.”THE INESCAPABLE FACTS OF GENETICSAs she has done before on SSI information days, medical geneticist Associate Professor Robyn Jamieson, Head of the Discipline of Genetics at the University of Sydney, delivered an informative overview of genetics for a lay audience.
She stressed the importance of genetics to the evolving area of personalised medicine (ie, healthcare) based on genetic makeup. Related areas include individualised medicine, precision medicine, and genomic medicine.After a description of base pairs (three billion), chromosomes, DNA, and genes, she moved onto a discussion of autosomal recessive (<1% incidence) and autosomal dominant (50% incidence) inheritance of eye diseases. Moving to specific eye issues, she attributed congenital cataracts, Peters Anomaly, and microphthalmia to probably just 100 known genes, while retinal issues such as RP, cone dystrophy, and Leber’s Congenital Amaurosis could probably be attributed to 200 known genes.Unfortunately, in both these groups, the rate of detecting and identifying the genes responsible lies between 30% and 70%, meaning up to 70% of cases do not have their genetic basis identified. As Assoc Prof Jamieson put it: “We just don’t know.”EYE DISEASES – NOT UNCOMMONAnother returning speaker, Associate Professor John Grigg, a paediatric ophthalmologist leading the ophthalmological education unit of the SSI, Sydney Eye Hospital and University of Sydney, started by stating that 3% of the VI are children with their whole lives ahead of th. Childhood blindness is only second to cataracts in the world blindness rankings.He ranked the top ocular probls in children as: hyperopia, myopia, astigmatism, ocular motility/strabismus, amblyopia, cortical visual impairment, optic nerve hypoplasia, optic atrophy, eye and adnexa, and choroidal/retinal issues.Defining a rare disease as having a 1:2,000 incidence, he gave the number of rare diseases as about 8,000, a number that translates to 6–10% of the whole population having a rare disorder. That is a challenge to the health syst generally but the challenge for the ophthalmic community is that 40 of the top 500 rare disorders are ocular. Assoc Prof Grigg identified the main probls as: uveitis, vernal keratoconjunctivitis, RP, Stargardt’s disease, anophthalmia and microphthalmia, ocular coloboma, and retinoblastoma.Currently in NSW, children are screened at six weeks by a neonatal nurse and at four years. The care of diabetes is now such that diabetic retinopathy (DR) is no longer the leading cause of blindness in working-age adults. Data from England and Wales now shows that inherited eye disorders surpass DR as the leading cause of blindness. The Australian situation is probably similar.

PRESENTERS
Sacha Thomas	Jonathan Goerlach	Grae Innes	Robyn Jamieson

 TERTIARY STUDIES WITH VISUAL IMPAIRMENTMs Sarah Hirst, a speaker at previous SSI events, updated the audience about her tertiary studies adventures. Blind since birth but with a small amount of vision raining, Ms Hirst has a Bachelor of Arts from Macquarie University, a public relations qualification from TAFE NSW, and is now studying for a Bachelor of Social Science, also at Macquarie. She is also a guide dog user.When asked what was the worst thing about being blind, Ms Hirst promptly replied “driving”, but then found the question too difficult to answer further. She did claim that VI was not a major barrier in life. Using a ‘report card’ format, she reviewed her own life and behaviour to date.For communications, she admitted that VI was difficult to convey to others not so afflicted, and initially, she was too ‘cool’ to admit to her probls. Now she tells people what she needs, rather than have th “put their foot in it” through inexperience. She suggested that if you see a person with a guide dog, simply ask th, “Do you need help?” or, “How can I help you?”For independence, she initially did not want to use a cane. Instead, she wanted to do everything others of her age did. Now she accepts realistic independence and is working with her second guide dog to travel widely and move around the community.For resilience, she had to learn to roll with the punches after deciding eventually that it was ‘cool’ to have non-functioning eyes. Resilience was required at university because there were regular struggles with educational materials being either delayed or not arriving.Happiness, however, she found hard to work towards. Her solution was to keep doing things, especially things involving her horse, her family, and her guide dog, not necessarily in that order. She summed up her philosophy as “Life isn’t about sheltering from the storm but dancing in the rain”.HUMAN AND LEGAL RIGHTS FOR THE VISION IMPAIREDMs Krystel Malcolm, another singer/songwriter, is Executive Officer of Blind Citizens NSW. Following a diagnosis of bilateral retinoblastoma at six months she was completely blind by two years of age. Her presentation was about human and legal rights that are the same for all people regardless of disability or normalcy. She defined those rights as basically what is reasonable and fair. However, she also noted that with rights come responsibilities.Her own education difficulties surrounded the lack of Braille music scores. She researched what was needed and approached the head of music about scanning and transcription of scores. Not only did the head accept her situation, they also appointed a staff mber to take responsibility for her special needs and those of any other disabled students.She described the rights of the disabled as a recent phenomenon but noted that changes were now powered by the Disability Discrimination Act. Evidence can be seen in the form of audible traffic lights, tactile street and road signs, modified education facilities, etc. She pointed out that legally, taxis must accept guide dogs as passengers when accompanied by their ‘owner’.As a last resort, the disabled can take issues as far as a court. In NSW, the Public Interest Advocacy Centre is one possible legal avenue to handle grievances, with the Disability Discrimination Act underwriting any endeavour. Identifying common needs is usually the role of peer-support agencies. Ms Malcolm believed the National Disability Insurance Sche rollout would likely require those affected to press for their needs.

PRESENTERS
John Grigg	Sarah Hirst	Krystel Malcolm	Donna Purcell

 PLOYMENT OPPORTUNITIES FOR THE DISABLEDRegular star performer and pin-up girl for just what can be achieved by a blind person Ms Donna Purcell, Diversity and Inclusion Manager for the Commonwealth Bank, explained that her role braced customers, staff, and the community with regard to the development of an equitable, inclusive, and accessible environment.A sufferer of Goldman-Favre Syndrome and already working with her third guide dog, Ms Purcell revealed that the Commonwealth Bank has many VI ployees. Perhaps her most telling revelation was the amount of time it takes to gel a relationship between an already trained guide dog and their future human charge – at least a month, full-time. That is time that the new ‘owner’ must be absent from work, which also necessitates an understanding ployer.Ms Purcell reiterated that VI ployees seek real jobs, not token jobs, and that they wish to be ployed for their skills, not out of sympathy or other nefarious reasons.Just two weeks before the information day, she returned from a 12-month secondment to the Australian Human Rights Commission focused on disabilities. She praised the Australian Public Service and other enlightened ployers (eg, Commonwealth Bank, St John of God Healthcare, and Crown Resorts Barangaroo) who have introduced guaranteed first-round interviews for those with a disability. After that step, the candidate’s real abilities become the judging criteria.The two things Ms Purcell sought to do were increase awareness and decrease the aura of negativity about the disabled being able to do ‘normal’ things, and advocate for increased access to education at all levels as a way to expand the opportunities open to those with a disability.To reinforce the point, she gave the proportion of disabled in ployment as 53.4% while 83.2% of able people were in ployment. She advocated for a reduction in that imbalance and, based on her own experiences, offered seven tips to the disabled:

• Be adventurous and don’t avoid change
• Try volunteering during school holidays
• Build networks of peers, family, friends, teachers, and coaches
• Find good mentors and use th
• Speak up and ask for help and support (give, take, share)
• Be prepared for changes
• Be sure to keep up with and brace technology, including appliances at home.

In parting, Ms Purcell recommended that the VI in the audience think big about ployment goals.SUPPORT SERVICES AND APPSSeveral support services and apps were also detailed during the course of the day, some of which are listed below:

• Ms Vicki Papageorgopoulos, representing headspace Camperdown as their Community Development and Engagent Officer, briefed the audience on the services headspace’s ‘one-stop-shop’ approach could offer 12–25-year-olds with VI and/or other probls, including mental and sexual health, general health, bullying, etc.
• Ms Jessica Taylor, an orientation and mobility (O&M) instructor with Guide Dogs NSW/ACT, gave some details of how the Pokémon GO mobile game could be used as an exercise in O&M. She also detailed how the voiceover feature in the app could be useful to the VI. She suggested attendance at special days provided by Guide Dogs, often arranged by age group, as a way of self-improvent and confidence building, as well as meeting new friends.
• Mr Greg Alchin, a visually impaired disability accessibility advisor, revealed some details about an upcoming iPhone app that has several features of benefit to those living with a VI. It has a magnification feature, and the ability to change or reverse colour sches to optimise the screen appearance for the VI. Even the colours thselves can be altered, as can contrast and the white point. Mr Alchin gave an overview of the evolving Internet of Things and how that would aid those with vision probls, even down to details like voice-operated locks, albeit with some security concerns. He also pointed out an iPhone feature, Medical ID, that allows for PIN-less access to ergency medical data such as health issues, medications, medical devices in use, etc., even from a locked phone. The Android equivalent is called ICE (In Case of an ergency).
• Ms Lisa Maude from the Centre for Disability Studies at the University of Sydney spoke about the National Disability Coordination Officer (NDCO) program of which she is the Sydney region coordinator. The program supports those with a disability to access and participate in tertiary education and subsequently helps th towards ployment. There are currently 31 NDCOs across Australia. The program aims to coordinate sign language staff, interpreters, note takers, readers, and writers needed for assignments and assessments, exam modifications, and adaptations to relevant technology.

In addition to presentations, the SSI information day included a break-out session for parents and carers of those under five years of age, organised by the Royal Institute for Deaf and Blind Children.Three leading SSI ophthalmologists – Clinical Professor Stephanie Watson, Dr Caroline Catt, and Dr Con Petsoglou – also made thselves available to anyone with questions in an ‘Ask an Ophthalmologist’ session run parallel to the main program.As with previous information days, the SSI, its clinical and administrative staff (especially the O’Kanes), and SSI donors without whose ongoing support the SSI’s functions would slow or cease, deserve thanks and congratulations for their efforts to assist all those with significant needs and a thirst for knowledge.